Section 1: Introduction and background

1.1 This report presents the findings of a review of the
National Carer Organisations (
NCOs) in
Scotland. The work was carried out by Reid Howie Associates for the
Scottish Government between November 2013 and June 2014.

1.2 The report is in 5 sections. This section describes the
overall context for the review, and summarises the methodology.
Section
2 presents the findings relating to the work of the
NCO
Network.
Section
3 describes perceptions of the Network, while
Section
4 summarises suggestions for the way forward. Finally,
Section
5 summarises the key conclusions and recommendations which can
be drawn from the findings. Annexes contain: a description of
support available to carers in Scotland; a summary of the work of
each individual
NCO; issues
relating to potential structures for the
NCO
Network; and an overview of the research methodology.

Background to the research

1.3 The review of the seven
NCOs in
Scotland followed a commitment by the then Scottish Minister for
Public Health, and built upon an initial scoping exercise by the
Scottish Government's internal consultancy team. The main purposes
were to:

Examine options for the reform of
NCOs and
the
NCO
Network (a national grouping bringing together the seven
NCOs
[1]) from, at one end of the spectrum, remaining with the
current set up to, at the other end, recommending a full merger
of two or more
NCOs.

Consider a shared vision and workplan around the outcomes for
carers that the
NCOs want
to achieve.

Make recommendations about the interface between the
NCO
Network and other relevant organisations, as well as about
potential assessment criteria for inclusion as an
NCO.

1.4 Related to these aims, there were a number of objectives,
which were that the recommendations made should help to
achieve:

The optimum outcomes for carers.

The most efficient and effective use of resources.

The optimum outcomes to ensure that the Scottish Government
Carers Policy Branch and the
NCOs best
serve each other.

Carers Trust Scotland (formerly known as the Princess Royal
Trust for Carers).

Coalition of Carers in Scotland (the "Coalition").

Crossroads Caring Scotland.

Minority Ethnic Carers of Older People Project (
MECOPP).

Shared Care Scotland.

The Scottish Young Carers Services Alliance ("The
Alliance").

1.6 The overall role of the
NCOs can be
summarised as being to aid the delivery of the Carers
[3] and Young Carers strategy documents
[4], and to ensure that the organisations are operating
effectively and efficiently to support policy relating to carers,
and carers themselves. While the main focus of the review was on
the
NCO
Network, it was impossible to undertake this without considering
the work of the individual
NCOs. This
helped to provide an overall picture of national support to carers,
and the detailed findings relating to the individual
NCOs are
presented in
Annex
2. The main sections of the report focus on the Network.

The context for the report

1.7 For around 15 years, there has been a clear and increasing
focus on the needs and issues experienced by unpaid carers and
young carers in Scotland. The key milestones are outlined briefly
below, along with some of the key current developments, in order to
set the review in its wider context. Firstly, however, it is
important to clarify the terms used in the review. The definition
of "carer" (from "Caring Together") is as follows:

"Carers provide care to family members, other relatives,
partners, friends and neighbours of any age affected by physical or
mental illness (often long-term), disability, frailty or substance
misuse. Sometimes the cared-for person will have more than one
condition. Some carers care intensively or are life-long carers.
Others care for shorter periods. The carer does not need to be
living with the cared-for person to be a carer. Anybody can become
a carer at any time, sometimes for more than one person. Carers are
now, and will remain, fundamental to strong families and
partnerships and to resilient and cohesive communities.‟

1.8 The definition of a "young carer" (from Care 21) is as
follows:

"A child or young person aged under 18 who has a significant
role in looking after someone else who is experiencing illness or
disability.‟

Strategy and policy

1.9 The first step in developing a clear focus on carers and
young carers was the publication of a Strategy for Carers in
Scotland (Scottish Executive, 1999). A subsequent key development
was the publication of the Care 21 report in 2006
[5], which set the foundations for a considerable expansion in
support for unpaid carers.

1.10 Two strategies, published in 2010 ( "Caring Together" and
"Getting it Right for Young Carers")
[6] set out a vision and actions to achieve better outcomes for
adult and young carers. These are central to this review, and are
that carers will:

Have improved emotional and physical wellbeing.

Have increased confidence in managing the caring role.

Have the ability to combine caring responsibilities with
work, social, leisure and learning opportunities and retain a
life outside of caring.

Not experience disadvantage or discrimination, including
financial hardship, as a result of caring.

Be involved in planning and shaping the services required for
the service user and the support for themselves.

1.11 Since 2010, the Scottish Government, through the
NCOs, the
NHS and local
authorities, has invested significant sums in work towards
achieving these outcomes. This has included investing in diverse
areas such as: support to help organisations of and for carers;
emotional and other support for carers; training; and the
establishment of funds to support short breaks (and promote
innovation in these).

1.12 There have also been developments in other policy areas
which impact on carers, including, for example, Self-Directed
Support and the integration of health and social care. Evidence
from
NCOs and
carer organisations suggests that many carers have faced challenges
as a result of reductions in local authority services and changes
in, for example, prioritisation criteria. Carers have also
experienced the impact of aspects of
UK welfare reform. There
have also been developments in policy and support for groups who
may
require care (e.g. people with dementia, people with learning
disabilities and disabled children).

1.13 There is now a complex "system" of support for identified
carers, with many organisations providing this, including some
NCOs, Carer
Centres,
GP surgeries,
social work services and, increasingly, condition-specific
organisations. There is also information and support via helplines,
the internet and social media.
Annex
1 summarises this support, helping to set the review in its
wider context.

Other developments

1.14 At time of writing, there is considerable work taking
place. The Statement of Intent, issued by the Scottish Government
to coincide with the second Carers Parliament, set out a number of
additional measures to support carers, including:

Giving carers access to an assessment on the same basis as
other service users.

The potential for a duty on public bodies to support carers
linked to eligibility criteria.

Improved access to information and advice.

A consultation on carers' legislation.

Improvements to the status of carers as equal partners in the
shaping, planning and delivery of support and wider strategic
decisions.

1.15 Previously, the Government identified a number of other
initiatives, including:

Advocacy for carers.

Improving information for carers (e.g. through the
implementation of Care Information Scotland and other
means).

Removing the potential for carers to have to pay for support
for themselves.

Changing the ways cared for persons can employ family
members.

The enactment of the Public Bodies (Joint Working) (Scotland)
Act 2014, in relation to the functions of local authorities and
Health Boards.

1.16 There have also been significant developments through the
Children and Young People (Scotland) Act 2014, and in support to
young carers (e.g. improved awareness among health, education and
social care services of issues for this group, and the ability to
recognise and support them). Some of the support has been made
available directly to young carers (e.g. short breaks, social and
emotional support, and events such as the Scottish Young Carers
Festival). Some initiatives mentioned earlier are also either
ring-fenced for, or available to young carers.

1.17 There have also been changes to local services. There is
evidence of increasing pressure on unpaid carers through the
rationalisation of support to cared-for persons (e.g. through
tightening of eligibility criteria for some services). More widely,
welfare reform is having a significant impact on carers, directly
and indirectly.

1.18 The Scottish Government has recognised the need to continue
to promote change, to improve outcomes for carers and to ensure a
more consistent approach across Scotland. The First Minister
indicated an intention to strengthen and extend the rights of
carers and young carers at the Carers Parliament in October 2013.
At the time of this review, the Scottish Government was undertaking
a consultation on legislation to further support carers and young
carers in Scotland (which closed on 16
th April 2014). Responses were being analysed when this
review report was being prepared, with a view to publication in
early 2015.

The overall importance of issues for carers and the need
for the review

1.19 These developments illustrate the importance of carers'
contributions to the delivery of health and social care and the
need to ensure that the support provided to them is as efficient
and effective as possible. The Scottish Government estimates that
there are over 650,000 unpaid carers in Scotland, and 100,000 young
carers (and is currently analysing all of the main Scotland-wide
sources of data with a view to publishing revised information).
There are also many "hidden carers".

1.20 Against this background, the work of the
NCOs and
the
NCO Network
was examined. The review gathered a range of information which, in
summary, included: documentary information; interviews and group
discussions with a range of stakeholders; and a written
"consultation" with two strands (one involving carers and those
working with them; the other involving relevant organisations). The
full methodology is described in
Annex
4. The remainder of the report provides the findings and
implications of the review.